Dementia and Driving Cessation: Preserving Mobility, Dignity, and Well-being
by Bonnie Dobbs
Canada is undergoing a demographic revolution that will continue into the middle of the next century. Based on long-term population projections, the proportion of persons 65 years and over will almost double from 12 percent of the population in 1996 to approximately 23 percent by 2041 (Statistics Canada, 1997). The aging of the Canadian population is transforming the demographics of the driving population: Older drivers are the fastest growing segment of the driving population now and older drivers will, within two decades, account for one in every four drivers. In addition, today's older drivers are driving more and longer into old age, and this trend is expected to continue. In fact, today's seniors are reported to rely more on private automobiles for transportation than do adults under the age of 60 (Rosenbloom, 1988). The increased driving and dependence of seniors on the private vehicle is, however, not without substantial cost. When amount of driving is taken into consideration, older drivers have the highest crash rate of all adult age groups (Carr et al., 1990; Transportation Research Board, 1988). Between 1979 and 1995, injuries and fatalities to seniors due to crashes increased by a staggering 47.2%. By comparison, injuries and fatalities decreased to 8.8% for those under the age of 65 (Transport Canada, 1997). The high crash rates of older drivers are unlikely to be due to aging per se. Rather, the crashes are likely to occur as the result of age-associated medical conditions that reduce physical and mental abilities. Several medical conditions (diabetes, pulmonary disease, cardiovascular disease) double the risk of at-fault crashes, with cognitive impairment associated with over a seven-fold increase in at-fault crashes (Diller et al., 1998). Thus, those with a progressive dementia form a particularly high risk group.
Declines in abilities necessary for safe driving place drivers with a dementia at danger to themselves, their passengers, and to other road users. Although all individuals with a progressive dementia will need to stop driving at some point in their illness, for many, declines in abilities dictate that driving cessation occurs early in the course of the illness. In fact, as many as 2/3 of individuals with a dementia have been found incompetent to drive in the early stages of the disease. Given that 8% of Canadians aged 65 and over have a dementing illness (Graham et al., 1997), and that, overall, over 60% of seniors are licensed to drive (Statistics Canada, 1999), driving cessation is an issue that is likely to impact a sizeable number of Canadians now and in future decades.
For many older adults (including those with a dementing illness), however, driving plays a central role, not only as a primary means of meeting one's transportation needs (e.g., grocery shopping, doctor appointments, social visits), but also as a symbol of independence and autonomy. For many, the prerogative to drive is synonymous with self-respect, social membership, and independence (Odenheimer, 1993; Rothe, 1990). Moreover, the license to drive is often seen as an indicator of competency, providing the older individual with a non-age related, non-stigmatized identity. This has been referred to as the Aasphalt identikit@ (Eisenhandler, 1990). Given the actual and symbolic importance of driving, it is not surprising that the forfeiture of driving privileges is a major loss for many individuals with a dementing illness (Dobbs, 1997). Research shows that compared to other aspects of the illness, over 70 percent of the caregivers of individuals with a dementia reported that not driving was one of the most, if not the most difficult aspects of the illness for the patient (Dobbs and Dobbs, 1997). In addition, compared to other aspects of the illness, the patient's not driving was one of the more difficult aspects of caregiving for more than 1/3 of the caregivers. AHow to tell the patient@ and Ahow to make the adjustment to not driving so that mobility needs can be satisfied@ are frequent concerns of caregivers who are told that the dementia patient should not drive (Lucas-Blaustein et al., 1988). Research suggests that those concerns are warranted in that loss of driving privileges often leads to a reduction in social activities (Dobbs & Dobbs, 1997; Huntley, Brock, Ostfeld, Taylor, Wallace, & Lafferty, 1986), social isolation (Eisenhandler 1990), and depression (Marotolli, de Leon, Glass, Williams, Cooney, Berkman, & Tinetti, 1997).
The loss of driving privileges also can have consequences that go beyond affecting the independence, mobility, and well-being of the individual with a dementia. The loss of driving privileges can affect the independence of the spouse since in today=s cohort of older drivers it is not unusual for the male partner to be the only active driver. In that case, both the husband and the wife become dependent on other transportation providers. Licensing revocation also has important consequences for other family members. In an examination of alternatives to driving, Freund (1996 cited in Fildes, 1997) reported that 80 percent of transportation dependent older people surveyed relied on family members for their transportation needs. However, relevant to this discussion, three quarters of the dependent older respondents reported dissatisfaction with the arrangement. Approximately 50 percent of those reporting dissatisfaction indicated a general reluctance to ask family members for rides, preferring to stay at home unless absolutely necessary. Importantly, almost 20 percent reported that they could not always rely on family for their transportation needs. Not surprisingly, most family members also reported difficulty in meeting the transportation needs of aging family members given other demands on their time.
Clearly, issues of driving cessation are difficult for individuals with a dementia and their families. In fact, Kapust and Weintraub (1992) report that decisions about driving are one of the most emotionally difficult issues for family members, often compared to decisions about institutionalization. Dementia support group leaders have echoed Kapust and Weintraub's findings. For example, dementia support group leaders from two Canadian Alzheimer Society Support groups (Ottawa-Carleton and Halifax) report that discussions about the loss of the driver's license are so emotionally charged that support group leaders do not allow it as a discussion topic during the last 30 minutes of the session. This is because they are often unable to calm the participants before the support session ends.
The loss of one's driver's license is often, for the individual with a dementia, for their caregiver and for other family members, 'the crucial event that [brings them] face to face with the menace of [this] devastating and irreversible illness (Bahro, Silber, Box, and Sutherland, 1995). For many, the loss of driving privileges is associated not only with a loss of independence, mobility, and freedom, but also with feelings of diminished self-worth, reductions in self-esteem, and a loss of identity. Despite the salience of this issue for individuals with a dementia and their families, there has been little in the way of research addressing these issues. Research is needed to advance our understanding of the psychological and social consequences of driving cessation for the individual with a dementia and for their families. That research needs to explore the issues from the vantage point of the individual experiencing the loss. Such knowledge is basic for the development of support programs to assist individuals, caregivers, and other family members in dealing with the loss and for the design of programs to help preserve mobility while minimizing the negative psychological consequences of driving cessation.
Outlined below is a research agenda that represents a first step in highlighting issues related to driving cessation and individuals with a dementia:
- Identity, self-esteem, and dignity. As noted above, loss of driving privileges is often, anecdotally, associated with a loss of dignity, self-esteem, and identity. Despite the negative psychological consequences associated with driving cessation, there is a paucity of research on this issue. Research is needed to advance our understanding of the psychological impact of driving cessation. This information is basic to the development of programs to minimize the negative psychological effects of driving cessation and to preserve the dignity and self-esteem for the individual. (e.g., support groups that address the psychological effects of driving cessation; communication strategies for physicians, law enforcement and licensing personnel, and family members that would preserve dignity and self-esteem, how to plan early for driving cessation, etc.).
- Mobility and independence. Mobility is central to the maintenance of health and well-being. Driving cessation often means a loss of mobility and independence. However, little is known about:
- the mobility requirements of this population, whether (and how) mobility requirements change over time (e.g., as the dementia progresses) and whether mobility requirements differ across contexts (e.g., urban vs. rural, caregiving context [spouse vs. daughter/son]).
- the impact of driving cessation on access to health services. An important, but less well recognized consequence of driving cessation is the impact on meeting one=s health needs. Health is both a reason for, and a reason for not, driving. The availability of medical services plays an important role in the health and well-being of all older individuals, including those with a dementing illness. However, driving cessation can severely restrict access to medical services, with untoward consequences for health.
- Transportation alternatives. A lack of adequate alternative transportation is clearly a factor in meeting the physical and psychosocial needs of elderly individuals. However, research is needed to identify transportation alternatives that can or will be used by affected individuals and their caregivers to retain mobility and independence. In addition, research is needed to determine if effective transportation alternatives differ across contexts (e.g., urban vs. rural, caregiving context [spouse vs. daughter/son]).
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